I wrote this post two years ago. As my son was going through Graded Exercise Therapy and Cognitive behavioural Therapy. Angus was deteriorating and was left bedbound. Having never being listened to I got quite cross with the medical profession, but that was no help to anyone. Two Years on we have learnt a lot, it is a shame NICE and the medical profession, NHS chose not to!
Yesterday I was taken by my family to the seaside; you cannot begin to imagine how this felt. I do not have the words to express the 101 emotions and joy. My twelve year old boy wanted me to hear the sea; I love the sound of the sea in summer. He wanted me to trust him. He wanted me to listen to him.
I took my own advice and I did listen to him, I did and do trust him. We ate fish and chips, we had ice-cream and we played on the amusements.
He took his own Heart Rate and Blood pressure readings, and I did not say a word. I have an amazing young man who is my hero, who is unique, my prize possession along with his sister who took me out for a Sunday jaunt to Felixstow.
How things could have been different/should have been different if they had only listened back then at the beginning. They seem to think that if the wheels move then don't look under the bonnet but:
If your car was broke how would you try to fix it?
Say you had this car, I'm not talking about any car but a unique, your prize possession of a car. You had this car from new and lovingly looked after it.
It is a glorious and beautiful sunny day, a good day to go to the beach. You know the sort of day I mean; the one you have been waiting for after a long hard winter. There is a crisp joyful tingle to the air, the blackbirds are singing. The sky for the first time, has that watery blue that makes you want to bath in the light of the warming sun. You really need to get out of the house and the idea of fish and chips along the sea front, with an ice-cream as you watch the sun slowly sink in the sky. Those sort of days that warm the cockles of your heart and soul. The days that make life worth while.
You go to the little car that is your pride and joy and marvel at the paintwork gleaming in the morning sun. You check everything is as it should be and you turn the key. The little engine splutters into life and although your a little puzzled to the haphazard running of the engine, you can't wait to get started, so brush it off as one of those things. Gently you start your journey but the buzz of the engine makes you just want to go with the flow, and as the engine fires into action and everything looks and sounds OK, you put your foot down and the little cars revs with joy.
The top is down the wind is blowing the cobwebs away and the simple pleasure of the beach starts to sing to you as the salty air fills you with memories and dreams. You hear the little engine misfire, and you start to loose speed. You are still moving, so not to worry, we will get there, we are in no hurry. You pat your pride and joy with reassurance and confidence, that when you get home you will be able to sort the problem out.
On the way back home, after just managing to get the fish and chips, you say not to worry we will come back when we have sorted the issue out and have an ice-cream next time. Your little car slows to a stop and you call the breakdown services out.
But they have no idea what the problem is and as you both stand there and scratch and look for problems it starts to rain. The emergency services advise you to fill the tank up with fuel and try again. many times you try to get the little car to the garage until finally you decide to go and get the fuel and fill the little car up where it stands at home.
While you check everything you know to clear the unseen problem out you dream and plan. Glorious days at the seaside getting that ice-cream you never had. going to summer shows, visiting friends and being with family. The little car keeps trying but even if you get to where you had planed to be the little car can barely make it home afterwards. For days and days you try to get the engine fired up again but it just wont turn over.
On the days you have it booked in to the mechanics for an overhaul, it runs - perhaps not perfect and not as it should be, but the engine ticks over. They say to you, just take it out for a good run, and it will be fine, it will clear out of all the gloopy stuff and will be better after that.
Each time you do this your pride and joy's engine keeps misfiring, and the paintwork somehow dulls no matter how hard you try to polish it. Other days it fires into action and you have a hard time catching up with it and fill your heart with hope, but this never seems to last very long. You sit with the little car, dreaming of past outings, the fun with family and friends you could be having. You plan.
My question is what would you do?
Try to keep starting the engine?
Run it flat out to try and clear the problem?
Trust the mechanics with their spanners and wrenches?
Try to look closely at the fuel?
Check the battery?
Look at the alternator?
Everything is just very slightly damaged in Myalgic Encephalomyelitis (ME)
In Dr Myhills Second Edition of Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis it's mitochondria, not hypochondria 2017 she has the same sort of analogy
Think of the body as a car:
Engine = mitochondria
Fuel = diet and gut function
Oxygen = lungs
Fuel and oxygen delivery = heat and circulation
Accelerator pedal = thyroid glan
Gear box = adrenal glands
Service and repair = sleep
Toolkit = methylation cycle
Cleaning - oil = antioxidants
Catalytic converter = detoxification
A driver = the brain in a fit state
Every thing on this list has been effected by ME
Everything is just very slightly damaged in Myalgic Encephalomyelitis (ME)
In Dr Myhills Second Edition of Diagnosis and Treatment of Chronic Fatigue Syndrome and Myalgic Encephalitis it's mitochondria, not hypochondria 2017 she has the same sort of analogy
Think of the body as a car:
Engine = mitochondria
Fuel = diet and gut function
Oxygen = lungs
Fuel and oxygen delivery = heat and circulation
Accelerator pedal = thyroid glan
Gear box = adrenal glands
Service and repair = sleep
Toolkit = methylation cycle
Cleaning - oil = antioxidants
Catalytic converter = detoxification
A driver = the brain in a fit state
Every thing on this list has been effected by ME